Category: Blog

  • Art, Access and Urban Walking

    On Saturday 7th October, I led a walk as part of the Love Arts Festival 2017 programme.
    The ‘Art, Access and Urban Walking’ grew out of the walk I led as part of Jane’s Walk Leeds in May. The idea was to create conversation around accessibility in urban and green spaces, and document it in a creative way through photography, writing, sketching, or spoken word. There were so many snippets of conversation I wish I had recorded, about the spaces we occupy, how we neglect visiting areas outside our neighbourhood; and once we hit the shopping park, conversation moved towards accessibility in public spaces.

    As I have written about before, I have a neurological illness, which has effected my mobility, and also my energy levels, as well as causing me great pain at times. On the day of the walk, I felt very disabled by my inability to network and talk about what I am doing and thus spread the word (I had not been able to get to any of the other events during the festival). This caused me to drop into a low mood and feel anxious about the walk. Part of my journey with a chronic lifelong illness, is looking at accessibility, and being able to take part in activities. This is more than just mobility and having access into a place, I need to consider my energy levels, restricting how far I can travel, and how long I can stay. Social isolation brought on by an illness can definitely have an impact on mental health, so leading this walk, it was important to me to highlight this.

    Map of the intended journey, note that it would take an average person just over 20 minutes to walk it without stopping

    We met at the Gatehouse Cafe adjacent to the Abbey House Museum. I noticed there is not signage out the front of the cafe, so it was not immediately obvious where it was.
    I had done research about the community in Kirkstall as well as looking at the route we were taking and questions that might arise. We discussed the extra steps that wheelchair users and those with reduced mobility have to take to enter older buildings, an impairment disabled by design. We acknowledged that it isn’t always practical to make the environment flat and even, especially in a hilly city such as Leeds, but in doing so, we have to also acknowledge the extra work that those with physical impairments have to take to travel places. However, some pavements are rather questionable.

    I explained to the group that since becoming ill, my pace had slowed considerably, I have to stop frequently to rest. My journey around the Kirkstall Parklands, has led me to discover details in the landscape that I hadn’t noticed or paid attention to before, as I rushed by. Walking my dog has given me the impetus to continue moving and exploring, regardless of becoming restricted in my location. I have begun without intention, to collect images. I documented spring fastidiously, learning the names of all the flowers in the process. Once flowering had died back, my focus moved to the environment itself, natures typologies.

    I have begun seeing more.

    Bark, the differing cloak of each tree, the marks scored deep, choked by ivy, the amputated branches leaving behind eyes, parasitic plants anchored to the ridges.

    Inspired by the Becher’s Typologies, my collection of observations uncover the journeys I take, the paths I frequently walk, and the flux in which nature exists. This is a work in progress, and I will update in a future blog.

    Our conversation moved to access in our local green spaces. There was a fascinating discussion about plants, the way in which they grow and survive. One of our members was fantastic at naming the trees and offering green fingered wisdom passed down from her grandfather. We talked about rest points, access to toilets, the incline of a path, the way in which the practicalities of accessibility may impact on the countryside and parks. We are rich with the green space the city of Leeds and its boroughs offer us, and yet we seldom investigate much past our own neighbourhood. I mentioned the wonderful Middleton Woods, an ancient woodland in south Leeds, best viewed when the carpet of bluebells are announcing spring. But there was surprise from members of the walk at the existence of Middleton Railway which is the world’s oldest continuously working public railway, founded in 1758.

       

    I created a list of community hubs, local sports, places of worship, events, volunteering etc in Kirkstall with the help of my local councillor Lucinda Yeadon, and a prominent member of the Kirkstall community. It ended up being over a side of A4 in length, and I don’t think it is even complete. This research was to find out more about our neighbourhoods, and to find pride in the places we live. Lucinda tells me that if we asked any other councillor about their ward, they would hopefully be just as helpful! If you are interested in finding out more about your area, you can find your local councillor here. I am sure a quick google to find your representative outside of Leeds, should reveal the answer.

    We reached the shopping park and conversation turned back to accessibility and how it can be applied. Amongst the group was an architect, and a PhD student who is studying at the Centre for Disability Studies at University of Leeds, his PhD has a working title ‘Personal Assistance: The Challenge of Autonomy‘. It is interesting to hear views from other people around the topic of accessibility, so it was really exciting to have someone who spends their time really researching the subject. Modern architectural design is considerate of the challenges that people with physical impairments have, but often the building itself is not enough to really address the societal barriers which people with impairments face. We discussed how the term ‘fully accessible’ is used a lot, but in actual fact, a wheelchair ramp and an just about accessible toilet is all that is on offer. Can places truly be fully accessible? We could have a changing places toilet, but does accessibility stop with physical impairment? The interesting ‘Around the Toilet‘ arts based research project, takes us into more depth about this subject. Of course, toilets are not the only barrier to accessibility. Sensory impairments, are often an after thought, if thought about at all. The lights we use, the sound, the layout, the signage, the colours, the crowds of people, the service, the knowledge…  Visual impairments, autism, hearing impairments, all of which can be disabling to a person if environments do not acknowledge their existences.

     

    Accessibility is a broad word, and looking past how to get into a place, we need to consider those who are left outside because of reasons that haven’t been considered. If we are truly to make something fully accessible, and our able bodies cannot think past ramps and toilets, we need to retrain ourselves on the true role of the social model of disability.

    We finished two hours later, and tiredness hit me, so we stopped at the pub. An interesting conversation developed between the two companions remaining, regards to nationality and how they fit in in England. Spanish, but living in Leeds for almost 4 years, and South African and living in the UK for much longer, their views on the country and the way we behave is very insightful. There is a reserve around the English, that being outspoken and animated, takes people by surprise. But in complete contrast to this, we have no problem staking our claim as a nation that has colonial pride, and hates being invaded. Racism has risen, more so after Brexit, and the lack of integration often thrown at immigrants with spiteful vitriol, forming the cause of their mistrust. I would not want to integrate with this notion of ‘real englishness’, if this red cheeked white man was looming over me like a monster – I would feel intimidated and seek the sanctuary of people like me. Accessibility eats at the heart of everything we do in society, and if we aren’t listening and considering the views of the people that our environments are disabling, then we are not accessible at all.
    Views on racism, and the nature of white supremacy within our towns, is another blog waiting to be written!

    The last thing I will say about accessibility, Kirkstall Bridge Inn is a wonderful pub, but I was very disappointed to see the red emergency cord in the accessible toilet, tied up out of the reach of anyone who may need it. Is it a hindrance? Well imagine life where your daily existence is constantly met with hindrance and frustration…

    I am hoping to draw in some images and thoughts from the people I walked with. So will add that at a later date.

     

  • Tetley Workshop – Mini Trini Garden

    SUNDAY

    Day two of The Tetley’s ‘Fantasy Carnival Garden’ and it was a hot one! Felt like we were actually in the Caribbean and not the Brewery Green outside. We had lots of visitors and returning families from yesterday. All the structures on the lawn looked wonderful, with a splash of colour and catching the wind, the birds flew and the windmill flowers span around.

    I printed out a few photos of birds from the islands of Trinidad & Tobago, to inspire the children and learn something new about a country they may well never have heard of, until now. I am privy to knowledge about T&T, as I have a (pen)friend who has grown up with me – almost 30 years now! I have been lucky to visit on a couple of occasions, and even had the opportunity to help create the costumes the ‘Mas bands’ wear during the parade.

    More about the carnival in T&T can be found here: National Carnival Commission and Carnival in T&T
    And of course the reason we are celebrating all things carnival this weekend, the Leeds West Indian Carnival has it’s 50th Anniversary this year. The Tetley is showcasing an exhibition of photos and archival materials of the carnival until October later this year.

    Below is how the day went:

    The birds in more detail

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    More from the weekend

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  • Tetley Workshop – Festival Carnival Garden

    SATURDAY

    This weekend there are four artist workshops at The Tetley as part of the 50 year anniversary of Leeds West Indies Carnival. Each workshop is based around this theme, and together we are building a fantasy carnival garden.

    • Mechanical Flowers – workshop lead by Jim Bond
    • Decorating Large Birds – workshop lead by Hayley Mills-Styles
    • Butterfly Wings – workshop lead by Sarah-Jane Mason
    • Mini Trini Garden – workshop lead by Mindy Goose

    My workshop was to create a scene based on Trinidadian (Trini) folklore and their birds. When Carnival first started in Trinidad, the costumes were based on folklore and eventually took inspiration from environment to decorate elaborate costumes, bright colours and bird feathers.

    So, inspired by this, we created hummingbirds, flying in the sky, and characters of folklore living in the forest (many of which I have chosen, because they are less macabre and more child friendly). There were illustrated descriptions to read, and photos of the birds of Trinidad & Tobago. We used collage and built 3D jumbies, Mama Dlos, and Papa Bois that lived in the trees.

    Tomorrow we expect even more wonderful creations.

    Saturday in photos:

    More from the weekend

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  • Bramley Elderly Action – in photos

    I have started volunteering for Bramley Elderly Action (BEA), as a befriender and as a photographer.

    A befriender is someone “who provides friendly conversation and companionship on a regular basis over a long period of time. Befriending provides an older person with a link to the outside world and often acts as a gateway for other services and valuable support.” Age UK

    I visit an elderly lady, who is in her 90’s, for an hour every Sunday afternoon. We chat about our lives, we have lots of stories to tell, and it’s really interesting to listen to someone with 50 years more history behind them than myself. I show her the photography books I have been making each month, and recently introduced her to my dog – a meeting that was truly wonderful, smiles and endorphins in the air, both parties were truly enamoured with each other, I knew my Mickey would make a good therapy dog, he does so well with me.

    I have also been taking photographs, on a voluntary basis, of various projects, for BEA. I enjoy meeting new people, and I haven’t managed to do much work recently due to illness, so this is something I want to do to get my confidence back and to ease myself back into seeking work again.

    Below are a selection of some of the photos I have taken:

     

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  • Kirkstall Stories – Family Workshop

    This weekend was the 3rd annual Kirkstall Arts Trail. This year  I opted to run a family workshop for Abbey House Museum (Leeds Museums). I’ve been running quite a few story based workshops, and thought a Kirkstall Stories inspired workshop would be great.
    We were moved over to the Abbey’s Visitor Centre, which was a great idea, as we were based alongside the main KAT hub, and tea and biscuits on tap!

    The day has been very warm, and we were visited by lots of people; sharing the space with a face painter was brilliant, even parents joined in, I haven’t seen many butterflies around recently, but saw plenty today. We worked well together, whilst waiting to have their faces painted, children could take part in the Stories workshop.

    Some of the little storybooks the children created were inspired by their time in the Abbey, what they had seen on the trail, or they were just inspired by brilliant imaginations (they all had brilliant imaginations). I am a great fan of using different materials to illustrate with, and we had a variety materials, coloured paper, glittery bits, sticky eyes, coloured pens and pencils, and plenty of different fabrics to use (kindly donated by my friend Kim Searle). I find if someone isn’t fond of drawing, then collage with materials is often a good choice. I also had my trusted story cubes, and photobooks of things mostly photographed in Kirkstall as inspiration.

    I really enjoyed the workshop, and sitting with families listening to what they had been up to on the trail, it’s wonderful that Leeds has so much to offer families that is free to participate in.

    I didn’t see much of the trail sadly this year (due to illness), so I look forward to seeing all the photos of the weekend being posted online.

    Please click on the images and scroll through them, they give insight into the book creation and tell more about the stories the participants were illustrating.

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    All photos taken on iPhone and edited in Lightroom

     

  • Chronic Illness – Part Three

    From GP to Diagnosis

    [September 2016] – It’s been almost a year since I began to present with problems,  trouble walking, tripping and falling over, visiting A&E, and generally feeling unwell. (see part 1) I visited the Doctors to find out what could be the underlying problem, after a few routine questions, and checking my ears for infection (balance and vertigo were high on my symptoms list at the time), she sent me for blood tests.  

    [October 2016] – The IT system that deals with blood analysis went down in Leeds. It took a long time to get my results back. There was no abnormalities present, I am aware I was tested for blood sugar levels and thyroid. The Doctor asked if I was feeling ok. I wasn’t. To get an appointment with the same doctor, I must wait several weeks. Funding and the NHS, is for another blog…

    [November 2016] – I return to the Doctor and she decides that I should be referred to neurology. At this point, I know that something is definitely wrong, and I am sure that it is something similar to Multiple Sclerosis. Part of me worries what if I am wrong, and they don’t find anything. This feeling plagues me for some time. It is both relief and with grief to find out that I was right.

    [February 2017] – After waiting some time, and my doctors chasing them up, I finally have an appointment with a Neurologist. I arrive prepared with my medical history – my perspective, and my symptoms over the last year. Making a record can prove to be really useful in these situations, as often you forget things, it is also important to include your family history of illness in this record, if you are aware of it. He carries out several neurological evaluations, and I also have my bloods taken for testing. He tells me from that examination and my history that I would need an MRI and possibly a lumbar puncture (formerly a Spinal Tap, but the fictional rock band stole the name).

    [March 2017] – The MRI machine is located in a car park, in a trailer. It is quite something that an expensive piece of hospital machinery is kept in the car park, I am not sure if it travels elsewhere in the city. An MRI isn’t scary, for me anyway. I do not get too anxious about the actual procedures, more the results. I felt quite relaxed during the scan, it was a moment to have a nap. Although it is really noisy, my thinking took me back to the 1990’s and trying to place where I had heard that BPM before and on what dance track. I had scans of my brain and upper neck. Afterwards, I felt a little dizzy, but nothing untoward.  

    [May 2017] – Again I had to contact my doctor to find out how long the results of my MRI, would be. The longer I am waiting the longer I am not getting better, and yes it can be quite frustrating. I finally got an appointment with my neurologist, which was quite a short visit in a hospital in the outskirts of Leeds. He told me that I definitely have lesions on my cervical spinal cord, and that this is causing my symptoms. However, he wasn’t sure if it was multiple sclerosis, and his clinical diagnosis at this stage was that it was caused by the shingles (herpes zoster varicella) I had in September 2015. They would need to investigate more, and would require a lumbar puncture.  My brain scan showed normal (which I like to joke, proves I am not crazy), but my spinal scan showed that I had lesions.

    waiting room
    waiting room decor

    [June 2017] – So the date of my lumbar puncture arrives. It is very early in the morning, and I find it quite difficult to get myself moving in the morning. I have been feeling nauseous for the last day or so, and this causes me some anxiety as I am unsure of how I will react to the procedure. I have lots of bloods taken. And a cup of tea. The procedure goes smoothly, and I am very fortunate, as it is one of the trickier procedures to carry out. Afterwards, I feel exhausted and dizzy. I have to stay on the ward for an hour, so they can ensure there are not complications, and also so I can rest, there is also lots of tea (caffeine is useful in helping recover apparently, prescribed by the doctor! I don’t normally drink caffeine, so three cups should definitely do the trick). Once the anaesthetic has worn off, my lower back feels like someone has punched it really hard. I feel nauseous, weak, and exhausted.  

    rest after the procedure
    lots of tea

    [June 2017]  – “Treatment is key for spinal tumours, as any damage it causes can be made more severe or indeed, permanent, if treatment is not sought soon enough.”
    “If you have been diagnosed recently with a form of spinal lesion, ensure you get as much information as you can on your condition. Although initially overwhelming, with the the right care treatment alongside self-education, you will be in a better position to heal, not to mention feel empowered through your treatment.” spinalcord.com

    I worry about my prognosis, as I have waited weeks between appointments, and not received a diagnosis. I visited my doctor, I have reached a point where I simply cannot cope with the neuropathic pain in my neck anymore (along with many other frustrating, painful symptoms). I sadly haven’t had much, if any, information given to me with regards to managing my symptoms from my neurologist. I have relied on web searches, and looking at medical websites when I have to google the terminology in the letters sent to me. I have used the MS Trust and MS Society for help with symptoms (even though I have not been diagnosed with MS, I have many similar symptoms and obviously the lesions on my spinal cord).

    In the doctors surgery, I spoke about the pain in my neck, and how I couldn’t concentrate at work; fatigue and how I have so much time off work, but I am lucky that I have an incredibly supportive employer; drop foot and how my walking is bad and not getting any better. My doctor was incredibly sympathetic towards me, which I am grateful for, he listened to me and prescribed some medication that should help my pain (gabapentin, which is used for nerve pain, like I have – I think it is the location where sparks are flying, due to the nerve damage, I think of my nerves as like electric wires, and the coating on mine have been compromised). He also told me he would write to my neurologist, crying unexpectedly through pure frustration probably emphasised my concerns.


    In the next blog, I will hopefully have news on my diagnosis.

    I think our NHS is one of the best in the world, and I am grateful that I am able to find out what my illness is, but it does worry me how underfunded it is – with pay to nurses, for example, at an all time low, junior doctors facing atrocious contracts, morale is clearly something I know is affecting the staff. We have services that cannot cope, and patients that are waiting months to be seen, it runs across all departments. Central Government is chipping away at our wonderful NHS, and paving way for a private system, which the citizens of this country do not want. The NHS needs protecting.